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tayler

@distaaybled

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disability advocate♿️patient scientist🔬
chronically ill + disabled and making the most of it💘
opinions are my own and do not reflect my employer

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and I will do it again and again!

If talking about it, showing it, being comfortable with myself and my stoma can be translational to so many other humans, there’s no hesitation for me🫶🏼

disclaimer: everyone has a different level of comfortability when it comes to their bag, stoma, and disclosure which is absolutely okay. This is what feels best and comfortable for me and I don’t mind using it to encourage others to take back their confidence.

VD: Tayler showing ostomy and changing her ostomy bag in front of a group of other people with another woman standing next to her explaining the process as well.

#ostomy #ostomybag #stoma #stomabag by @distaaybled

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6 months ago

everyone deserves access to the outdoors - including disabled people, no matter what that looks like.

I’m using the new @paiseec_global FLEX in this video for the first time and love it !!! It made me feel so much more confident commiting to a walk where I’m not sure how my body will do, because I have the option to turn it into a “roll” if I overestimated my capacity (or if my body just decides we’re done🤪)

You can use code TAYLER15 for a discount if you want one too!

VD: Tayler, a young white woman with medium length brown hair, using a rollator / electric wheelchair in both modes on a walking path. The video features a comment that reads, “so we’re going on rolls now” implying rolls instead of walks are inferior.

#chronicillness #chronicpain #wheelchairuser #EDS #ableism by @distaaybled

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3 hours ago

yesterday was mental health awareness month, and I struggled finding the words I needed to talk about it.

My mental health journey has been anything but normal or straightforward. Since I was as young as I can remember, I have struggled to some capacity with my mental health. When I was still in elementary school, I wrote out the plans for my funeral because I thought about death often.

The relationship with my mental health is confusing, and I can’t seem to trust her. Her ebbs and flows and sudden changes catch me off guard.

I have tried my best to treat her well, but always seem to come up short and continue with the path we know so well. To an extent, I am at the mercy of biology. Having a genetic mutation that creates treatment resistance to medication that would otherwise help. Having biological risks for autism, treatment resistant depression, etc create for a difficult time to overcome them.

Yet somehow myself, and others in similar positions, find a drive somewhere inside us to try again. And we try again. And again. I hope I have many more “agains” in me, and I hope you do too.

I am constantly learning it’s okay not to be okay, and that phrase was reshared by a lot of people yesterday, but to actually FEEL someone make space for my “not okay-ness” is rare. I hope more people will be that space for other people. I hope I can be that space for other people. Because we need to not be okay and have people sit in that not okay-ness with us, otherwise we won’t make it.

to all of those already *very* aware, here is to a late mental health awareness day, and I’m sorry you are❤️‍🩹🧠

#mentalhealthawareness #mentalhealthawarenessday #mentalhealth #autism #depression by @distaaybled

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2 days ago

OCD awareness month and PANS/PANDAS awareness day is the perfect opportunity to talk about the relationship between the two (what are the odds?!)

Many people haven’t heard of PANS/PANDAS, the prevalence is unknown as it is underdiagnosed and not well studied, but it is considered to be rare.

OCD is not rare, with about 1 in 40 adults having OCD at some point in their lifetime.

OCD is debilitating and isolating. PANS/PANDAS is confusing and extremely difficult to navigate. You are not alone❤️‍🩹🧠

Check out my substack post to read about my experience with suspected PANDAS and OCD

#OCD #OCDawarenessmonth #PANS #panspandas Title slide with a blue-to-peach gradient background. White text reads “Obsessive Compulsive Disorder (OCD) & Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANS/PANDAS).” Header text reads “@distaaybled, OCD Awareness Month, PANS/PANDAS Awareness Day.” A line-drawn brain sits in the bottom right corner. by @distaaybled

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3 days ago

as promised, here are my @guavahealthinc symptom groups that help me *actually* log my symptoms so I can get super sick insights (if you don’t know what insights I’m talking about scroll back a few posts).

I loved when guava introduced groups because it made me way more consistent at logging my symptoms. A lot of my symptoms are shared between groups which perfectly represents how complex chronic illnesses can be🤪

I struggled with actually naming my symptoms for awhile, so if you need some ideas, feel free to steal mine!!

If you don’t use guava yet but want to start, comment SYMPTOMS and I’ll send you a link!

#chronicillness #eds #pots #healthtracking by @distaaybled

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8 days ago

HAPPY WORLD OSTOMY DAY 🌎🫶

Change your ostomy bag with us!! Wherever you are today in your ostomy journey we hope you at least know that you are not alone. Getting an ostomy is scary, overwhelming, and can feel incredibly isolating (especially at the beginning). But there is a beautiful and vibrant ostomy community here ready to welcome you with open arms.

#worldostomyday #ostomy #stoma #ileostomy #ostomyawareness by @distaaybled

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10 days ago

Happy world ostomy day to every ostomate! Ostomies are not gross, not something to hide or be ashamed of, and save lives! Shoutout to the ostomates that are changing the narrative about ostomies and showing life is not only worth living, but we’re given life back because of our ostomies🤎

VD: Tayler, a young white woman with medium length brown hair, wearing all white with a fun pink frilly ostomy bag cover walking in slowmo towards the camera and the text reads, “happy world ostomy day to all of the ostomates daring to change the narrative.”

#worldostomyday #ostomy #ostomyawareness #ostomybag by @distaaybled

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10 days ago

Sometimes you can do everything possible to be prepared, and things can still go awry🤪

I can’t guarantee everything will go to my plan, but at least I can say I did everything I could to make it not only easier for myself, but hopefully for the employees as well.

Comment TRAVEL for a link to my travel guide in collaboration with @guavahealthinc

VD: Tayler, a young white woman with medium length brown hair, in multiple clips throughout airports and planes.

#chronicillness #disability #accessibility by @distaaybled

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11 days ago

went to the dentist yesterday👍🏼 got a filling👎🏼 comment DENTIST to read about how I manage going to the dentist as an autistic person with dental specific PTSD🪥 shoutouts to @tanglecreations and @myobiofficial for always being my go to support items <3

Two photos of tayler in a dental chair giving 2 thumbs up, the first says, “what helps me at the dentist as someone with dental trauma and autism spectrum disorder.” The second has arrows pointing to different areas in the photo labeled, “sunglasses,” “laughing gas and anxiety med,” “tangle fidget,” “myobi heating pad,” “headphones with a comfort show,” “blanket.”

🪥dentist autism dental trauma ASD by @distaaybled

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13 days ago

it hasn’t yet, and I try my absolute hardest to not let it.

Unfortunately I’ve had to fight through more than just the physical threats from chronic illness. Being suicide prevention month, it’s important to talk about and acknowledge the impact living with chronic pain and suffering can have on your mental health.

Chronic pain is a risk factor for suicide, with rates of suicidal ideation ranging from 18% to 50% among patients with chronic pain, and a U.S. study found that 8.8% of the suicide deaths involved chronic pain. It’s shown that the risk of death from suicide is at least twice as high in those with chronic pain than those without.

It’s hard to feel like your body has failed, then to feel like your brain is betraying you too. To feel like the pain and symptoms will never end.

life isn’t perfect, I’m not cured or pain free. I’m not even to a place where I am content with what I’m able to do. But I’m still here.

VD: Tayler, a young white woman with medium length brown hair, in multiple clips showing struggles through health issues.

Sources: https://www.jpain.org/article/S1526-5900(23)00452-2/fulltext

https://doi.org/10.1136/bmj-2023-076036

#chronicillness #eds #ehlersdanlossyndrome #ostomy by @distaaybled

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16 days ago

Although suicide attempts and completion are significantly increased in autistic individuals, the lack of research and resources for prevention is alarming. Prevention tactics for non-autistic individuals may not work the same for autistic individuals due to differences in cognitive thought processing and autism-specific risk factors not accounted for in non-autistic populations.

Research is closely to zero, but we’ve been here yelling about it.

Alt text available

#autism #suicidepreventionmonth #actuallyautistic #asd Title slide featuring an illustration of an orange brain with white highlights and black outlines. Text reads “@distaaybled” at top, “Autism and Suicide Prevention” as the main title in black serif font, and “awareness” in white text on an orange banner. Bottom text reads “Suicide Prevention Awareness.” by @distaaybled

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18 days ago

happy World Narcolepsy Day from your fellow sleepy girl!

Narcolepsy is surprisingly misunderstood by a large number of people, and some studies suggest about half of those with narcolepsy are undiagnosed.

I was diagnosed 5 years ago with an onset age around 12 years old. Even after I was diagnosed, I was in denial that I actually had narcolepsy because I didn’t collapse sleeping in the middle of conversations, or because I often struggled with insomnia, which I later learned is actually a symptom of narcolepsy!

There is still much unknown about the actual cause, some research suggests it could be autoimmune, and we don’t have many treatments that target the underlying biological issue.

Swipe to learn more!

#narcolepsy #worldnarcolepsyday #narcolepsywithcataplexy Overhead view of rumpled beige and taupe bedding. Brown serif text reads “all about narcolepsy” with “World Narcolepsy Day” below and “@distaaybled” at the bottom. by @distaaybled

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21 days ago